PKD Life - Spring 2020 - 15

My Advice

1 Find support. This
disease can be very hard to
live with, but reaching out to
people who are in the same
community can really help.

never need a transplant. I hope that one day I'll be
able to live comfortably with the disease and won't
have to worry about it at all. I do think we're headed
in that direction.

2 Live your life. At the end
of the day, just live your life
the same way you would if
you didn't have the disease.
Anything is possible if you
really put your mind to it.

DAY-TO-DAY LIVING

"I'm open with
my friends about
my disease,"
says Topher,
with his mother,
Laura, below.

TOPHER AND LAURA: COURTESY OF SUBJECT

and he or she is supposed to give you the news. But
as soon as the technician put the ultrasound wand
on my stomach, my mother burst into tears. She
immediately saw the cysts on my kidneys.
My mother blamed herself because it's genetic. I
know it's not her fault. But still, she's my mom and
she felt terrible. I've had so many family members
with the disease, and they've had so many varying
experiences. I was just glad we caught it early.
Medicine is advancing every day, so I know if I
take care of myself, there's a good possibility I may

"I don
't l
anyt hi et
n
stop m g
e."

I have high blood pressure, so my doctor prescribed
medication to keep my pressure under control in
order not to tax my kidneys. I eat a healthy, lowsodium diet, I drink a lot of water, and I try to be
as active as possible. I don't think I need to hit the
gym every single day, but I do make the effort to do
some light cardio workouts at least a few times a
week, and I walk a lot, since I go to school in New
York City.
There are times when students like to go out and
have a few alcoholic beverages, and hey, college is
a time where sometimes we even push the limits
a bit. I'm honest with my doctor about my lifestyle
and was told a few drinks every now and then is
perfectly fine. I know I can't drink to excess, but
nobody should do that anyway.
I'm open with my friends about my disease, and
I don't think that there's any reason not to share.
It doesn't change me in any type of way. I guess
people might look at me differently because I have
this disease, but at the end of the day I'm the same
person and I'm just trying to live my life like everybody else.
Honestly, I don't think my disease affects my dayto-day life all that much. As a college student, my
life is super busy and the disease hasn't cut into that
at all, or at least I don't let it. Last year I was on the
crew team, and this year I'm an RA in my residence
hall. I'm also on the board of two different campus
clubs, and I have an internship at NBC.

BRIGHT FUTURE

I'm a communications major with a concentration
in media production. My goal is eventually to be a
producer. Last semester, I worked at Weekend Today,
and right now I'm working for Late Night with Seth
Meyers. So really, I don't let anything stop me.
I admit this disease can be difficult and even
debilitating. But if you don't let it define you, really
the possibilities are endless.

*

NOTE: This interview and photo shoot took place in early
2020, before the coronavirus crisis escalated in the U.S.
When this issue went to press in early April, Topher was
living off campus and continuing his studies online.

S H A R E Y O U R S TO R Y AT C O N N E C T. P K D C U R E .O R G / V O I C E S - O F - P K D

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PKD Life - Spring 2020

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